Medical teams help patients navigate organ transplants

Coordinators and a surgeon talk about their roles in helping patients through the organ transplant process.

Buy Photo

Dick Hanusa, 66, of Oshkosh talks about his kidney transplant last August at Froedtert & the Medical College of Wisconsin. The donor was his daughter’s best friend, Michelle Schuerman, who was the closest nonfamily match that Froedtert has seen. Hanusa is very active and he keeps in close contact with his donor two to three times a week.(Photo: Joe Sienkiewicz/Oshkosh Northwestern Media)Buy Photo

Story Highlights

Transplant coordinators are described as part quarterback, part advocate for patients.

Medical staff say it's impossible not to make an emotional connection with patients and families

The wait for an organ transplant can range from months to several years

On average about 21 people a day die while waiting for an organ transplant.

OSHKOSH –It was an early August day last summer when Dick Hanusa and Michelle Schuerman were wheeled into the operating room.

After two years of waiting, Hanusa received a new kidney from a friend of his daughter at Froedtert & the Medical College of Wisconsin.

"It's pretty amazing that somebody is willing to give another person an organ," the semiretired Oshkosh man said Thursday.

A transplant can be a long road involving a host of medical tests, regular checkups and the wait for a suitable organ. In the middle of the process — which can range from months to years — are transplant coordinators, who describe themselves as part quarterback, part patient advocate and part cheerleader.

"There's a lot of pressure, and it's a different kind of nursing," said Deb DeWees, a registered nurse and pre-kidney transplant coordinator at Froedtert & the Medical College of Wisconsin. "It's more of a counselor-type of nursing than an intensive care unit-type of nursing. ... People that do this job need to have the ability to stick with the job for the long term, to see the big picture and to be patient."

Coordinators not only help patients navigate the medical evaluation and getting on a waiting list, they also help recipients remain ready for when an organ becomes available.

"It's my job to make sure they're doing as well as they can, both physically and emotionally until they they get transplanted," said Ann Wade, a registered nurse and certified transplant coordinator with Aurora St. Luke's Medical Center in Milwaukee. "People wait for a transplant, and they wait quite awhile, so part of my job is to keep the morale up as best as I can and help them work through the process of waiting."

April is Donate Life Month. Gannett Wisconsin Media is partnering with Froedtert Hospital & the Medical College of Wisconsin and the Green Bay Packers' Randall Cobb to raise awareness about the issue. About 2,300 people in Wisconsin — and 123,000 nationally — are in need of a transplant. The four transplant programs in Wisconsin say the need for organs is a long-term issue expected to continue.

"What's heartbreaking are some of the patients that have been on the list so long. Three years or five years, and they're still waiting," said DeWees, who grew up in Allouez near Green Bay.

"The longer you're dealing with patients, you do become very emotionally invested in them," DeWees said. "The highlight of my job is when I come in and get the email that one of my patients who has been listed for such and such a time has been transplanted. That's the reward."

On average, about 21 people a day die while waiting for a transplant, according to the Organ Procurement & Transplantation Network. Through April 10, 2,577 transplants have been performed this year using organs from 1,257 donors.

Transplant coordinators are one player in a larger team that can include dozens of medical professionals ranging from organ specialists and transplant surgeons to a transplant pharmacist, schedulers, psychologists and financial coordinators. The job is intense and stressful. But it's the patients and their families who make it worthwhile, the medical professionals said.

"I've been at St. Luke's for 23 years — and have been a coordinator for 14 years — and it's the patients, getting to know them, their stories, and seeing them get a transplant and have a happy and healthy life afterward," Wade said. "It's also seeing those patients that aren't going to make it and being able to help them, and the family, through that process, and helping them heal."

Aurora St. Luke's started its program in 1968 and counts more than 800 transplants in the last 47 years. While operations are performed in Milwaukee, the hospital system maintains a transplant coordinator at Aurora BayCare Medical Center in Green Bay.

Never routine

Dr. Frank Downey, surgical director of cardiac transplants and mechanical circulatory support at Aurora St. Luke's, said there's a long-term gap between available organs and patients in need.

"The need is phenomenal," Downey said. "At any one time in the country there are 3,500 patients waiting for a heart transplant. Since the early 1990s, only 2,300 heart transplants are done per year in this country because of the limitation on the number of donors available."

Mechanical equipment, like left ventricle assist devices, are used to keep patients alive while suitable donors are found. Downey said each donor heart is carefully evaluated and compared against a list of waiting patients.

"We try to maximize every donor," he said. "We get calls every day. Some years we get 1,000 calls in a year. Last year we were around 500."

The transplant team seeks organs within a three-hour travel window of the hospital.

"With Lear jets and such, we've gone as far west as Albuquerque, N.M., as far south as Melbourne, Fla., and to the East Coast," Downey said. "We've even gone into Canada a few times."

One of the hospital's doctors travels to the donor site, evaluates the heart and surgically removes it before flying back to Wisconsin. There another surgeon has prepared the recipient and will perform the transplant.

"It's never routine," Downey said. "Every patient is a story ... and it's incredible what these people go through."

Personal connections

With such an intense process, DeWess, Wade and Downey said it's impossible not to make connections with the people they are helping.

"I'm very emotionally involved, probably a little bit more than I should be. Our patients get sick and we spend a lot of time with them on the phone and in the clinic, and we go see them in the hospital," Wade said. "It's tough sometimes because you get to know them and their families, and you really become a transplant family. We've had a couple patients that were called in multiple times and you have to put on the cheerleader hat and keep going."

Downey has done close to 100 heart transplants in the last five years. He said the operation remains an amazing process.

"I still get excited when I get a call that we're going to change somebody's life," he said. "We know all these families, we know what it means to them and how it's going to impact their quality of life. It's kind of magical. You live and die with these patients. It takes its toll."

'Light switch'

Hanusa, 66, came out of surgery after almost five hours with news his newly transplanted kidney was functioning and that Schuerman, his donor from Franklin, was doing well.

"It's been pretty amazing. Prior to the surgery my kidney function was down to about 10 percent," he said. "I was tired and fatigued all the time, I just didn't have any energy ... Once I got the new kidney I was amazed at how wonderful I felt and the energy, it's like turning on a light switch."

Both Dick and his wife, Rita, say they are awed by Schuerman's generosity.

"My comment was, 'You gave my husband his life back,'" Rita Hanusa said. "I count my blessings every day that he's still here and that he's doing as well as he's doing. I thank Michelle every day."

Nathan Phelps may be reached at (920) 431-8310 or nphelps@gannett.com. Follow him on Twitter @nathanphelpsPG or Instagram at Nathan_Phelps_PG.

On the web

•Donor registry: yesIwillwisconsin.com

•Froedtert & the Medical College of Wisconsin: froedtert.com/donatelife